Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mama And Baby Both Celiac


veggiemama

Recommended Posts

veggiemama Rookie

Hi,

I just wanted to introduce myself. I found out recently (within the past week) that my daughter and I are both celiac. She is almost 12 months old. She has had rashes basically since she was born. She is breastfeed, and I found out that wheat bothered her through my milk when I would eat wheat but I never thought it could be celiac. I did not know much about it.

Before knowing that we were celiac, I stopped eating wheat but then I started eating it again and her rashes came back. Again -- I never really thought more into it other than "oh she must just be sensitive to wheat right now"

All my life I have had digestive problems and I knew that eating wheat in particular really aggravated my stomach from time to time. I actually went wheat-free and sugar-free for a long time (I'm vegan) and felt better. But during the pregnancy is really when I started having problems. My midwife wanted me to eat "protein protein protein!" so I added wheat to my diet again. I ate bagels, sandwiches... not to mention other gluten containing grains.

After the birth, my stomach problems got even worse. I felt nauseated lot but I did not know why. Recently, I got food poisoning which was awful and when I started feeling better and was able to eat again, I started eating rye bread sandwiches, spelt pretzels and wheat crackers (before I knew I was celiac obviously) and I started to feel bad again. Now my stomach is so aggravated I can hardly eat without feeling nauseated and having stomach pain. Its probably been about 3-4 weeks since I've had gluten. Shouldn't I start feeling better? I've been living on potatoes. My next approach is drinking fresh raw juices because I know they heal the digestive tract.

I'm off all grains even ones that do not contain gluten, soy and all nuts. However, this is not a problem to me since I am not able to eat much of anything at the moment.

Any thoughts or suggestions will be much appreciated :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ItchyMeredith Contributor

Welcome! You came to the right place. This board is an amazing hub of celiac information. I have learned so much in my 8 months here. I too am a vegetarian celiac. I believe mine turned on during my first pregnancy but I only found out in June. We are trying to find out if my oldest is celiac too. Just curious- how did your baby get her diagnosis? It is wonderful that you found a doctor who was able to get to the bottom of this. Many parents struggle for years to find the answer.

My advice to a new veggie celiac is to:

1) Read everything you can about celiac and arm yourself with information. After reading just a couple of books you may find that you know more about celiac than your family doctor. 2) Also- stay active on here and feel free to ask questions. BabyCenter.com also has a board for parents of kids with food allergies. Celiac is not an allergy but that is where the celiac mommies go too. There is also a board called Vegiac for vegetarian/vegan celiacs. Open Original Shared Link 3)Get a few cookbooks. My favorites are The Gluten-Free Vegetarian Kitchen by Donna Klein, and The Gluten-Free Vegan by Susan O'Brian. I got both of these on Amazon.

Good luck with everything! You and your baby will be fine once you get adjusted to the diet. Message me if you have any more questions.

Mere

dandelionmom Enthusiast

I was going to suggest cutting out dairy then I realized you're vegan so that doesn't help! I wonder if you need to go back to the doctor for allergy testing to see if you're allergic to any of the foods you're eating.

I ditto the suggestion to check out the Vegiac site. I'm a vegetarian with celiac and it gets hard to think of what to eat sometimes!

veggiemama Rookie

Thanks for all your suggestions.

Is there anything that may be good to put topically on my daughters rashes until they clear up? She reacted to the gluten in my breastmilk when I was eating gluten-containing foods. She itches the rashes.... I have heard of putting diluted apple cider vinegar on the rash (as well as putting some in her bath). That seems to be helping.

missy'smom Collaborator

There is a skin condition associated with celiac disease called dermatitis herpetiformus(sp?) that is itchy. There is a cream they can prescribe for it. You can read about it here at the Celiac Sprue Association website.

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,405
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.